This article presents an agenda to improve the care and wellbeing of children with paediatric feeding disorder who require tube feeding (PFD‐T). PFD‐T requires urgent attention in practice and research. Priorities include: routine collection of PFD‐T data in health‐care records; addressing the tube‐feeding lifecycle; and reducing the severity and duration of disruption caused by PFD‐T where possible. This work should be underpinned by principles of involving, respecting and connecting families.

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How to bring about positive change is a key concern in cultural-historical theory. There is an urgent imperative to address questions of transformation at the nexus of the individual and the social. One way to approach this is through the concept of agency, the means through which people go beyond coping with problems or adapting to the status quo, instead striving to make the future that ought to be a reality. This paper takes up ideas from Stetsenko’s transformative activist stance (TAS), Sannino’s transformative agency by double stimulation (TADS), and Edwards’ relational agency, tracing the emergence and enactment of agency among parents of children with complex feeding difficulties. These children were unable to eat orally, instead using a tube to feed. Each family strived towards, and realised, futures where their child was able to feed orally, without a tube. Parents acted agentically in ways that were contingent upon relevant cultural tools. Such tools are key to futures that are more inclusive, equitable and nurturing for all children and their families. The paper highlights the value of contemporary cultural-historical approaches to agency in understanding and provoking transformation at the nexus of the individual and social.